Humira in ulcerative colitis reviews

With the recent approval of Humira (Adalimumab) by the FDA, there is a growing need for ulcerative colitis patient reviews of their experiences with this medication. Like some other biologics, Humira helps to stop the communication of a specific part of the immune system’s inflammatory response.

Many UC’ers are concerned that immune suppresants such as Humira will stop their immune system from working. That is not entirely true. Humira’s main goal is to stop the TNF alpha section of the immune response. (If humira stopped everything in our immune systems from working…it would be game over for everyone real quick).

Although Humira was approved by the FDA much later than Remicade which is a similar immune suppressant medication, there has been research and studies with Humira as far back as 1999 when it was still under development.

Like all medications, doctors should be consulted considerably when the decisions are being made to potentially start medications. Humira is no different. There are many reported potential side effects, and you as a patient should be well aware of what these are.

If you have experience with taking Humira for treating your ulcerative colitis, please consider leaving a review of your experience on this page.

Jul 23, 2013 by Crystal

Country & City: Champlin, MN.

Humira has to be one of the worst medications I have taken for my UC. I developed Autoimmune Hepatitis from Humira and now have to be a slave to labs every two weeks, monitoring my liver, hoping that it will go away and stay gone. Not enough research has been done on this drug to know if the Autoimmune Hepatitis will remain a chronic condition, or go away now that I have stopped the medication. Be VERY cautious when taking Humira, and listen to your body – I was told that there was less than a 2% chance of having any liver problems, and look what happened to me. Be your own/best advocate especially when doctors won’t listen to you.

After my excruciating loading dose, i developed frozen joints and c diff after a day. I did not know humira could cause c diff or else i really doubt i wouldve taken it. Been struggling with that for the entire year since my loading dose in january. I only took that first day of doses- only three of the four because i fainted from the pain of the shots. I couldnt bare to take the last one. Definitely something i regret taking. I always hate seeing those untrue commercials of the happy humira patients because i have a feeling there is a way larger amount of unhappy humira patients.

The “gift” that keeps giving!

Jul 22, 2013 by Shelly Miller

Country & City: Maine

After becoming allergic to remicade and hitting another severe flare and waiting weeks for approval…I think it did stop the bleeding despite being allergic to it the whole time (6 months). I experienced lots of rashes, numbness, tingling, chest pain-even had to have heart stress test, nerve pain, my body is forever changed because of it.

I hope it works for others, but read all you can so you know what to expect for side effects and make an informed decision.

So far so good

Jul 22, 2013 by Jennifer

Country & City: GA

i have been on humira for approx 1 month now. not showing any vast improvement nor am i showing any major problems shown below (however i’m also noticing its around the 3-4 month mark where ppl seem to have difficulties). i will say my urgency has increased. i have about 15-20 second window before ill shit myself, and usually dont make it about 3x per week. take ty3 for pain (it slows my gut down too).

I haven’t had any lesions or fevers yet, however had to stop the 6MP immediately due to staph infection on my ankle WBC was 2 and hemoglobin was 7.8 (this was before humira though).

Ive been a lot worse, but definitely wont accept this to be “normal”. i have UC pancolitis and have tried all the sulfa and mesa drugs, canasa, rowasa, remcaid, uceris, apriso, asacol, etc. will update in another 2 months to see if i have any of the bad reactions around the same time period. hoping not… hoping this drug kicks in. dont have any options left other than surgery…

Too much too handle!

Jul 22, 2013 by Violet Sterba

Country & City: Washington

I do not like Humira period. It has made me miserable since starting it. I was diagnosed two years ago with UC and have been uncontrollable. Put on Humira 4 months ago and I have been sicker with everything else since. Had a 2 week long cold. Than had a nasty fungal infection that lasted two weeks in my mouth, basically thrush combined with multiple canker sores. Couldn’t eat without Vicodin. After a week into fungal infection, my sinuses flared and ended up with a 4 week long sinus infection. First 2 weeks was self care, finally broke down and went on antibiotics when I spiked a 103 temp and couldn’t move off my couch. Couldn’t get any air up my nose, nor could I get a sinus rinse to go up. Than the bumps started. Yes, I looked like a spotted leopard on my arms and legs. Erythema nodosum is what they call it. I have giant red patches all over my arms and legs that are hot, painful and sometimes itchy. My ankle is the size of a softball, literally no thanks to the bump on my tendon swelling. I could barely walk at one point the pain in my ankle was do severe. Back on Vicodin I went as well as a 2 antibiotic because the other antibiotic wasn’t working as well so I got to get a stronger one. Sinuses are clear now, start of week 5 but my spots are just as horrible. I’ve asked to be taken off Humira – denied. They actually want to increase my injections!!! Now I’m being referred to the University of WA to see their specialists. I have basically stopped all meds except for prednisone and I feel better. I felt worse on all the meds with no UC results. I think I’m going to hit this with diet now. I’m tired of the meds and broke cause I take so many. Humira may work for some but it’s been a horrible experience for me!

Nope Nope Nope.

Jul 22, 2013 by Geof

Have had UC proctitis since summer 2010 – Average 6-10 BM’s a day, pain between 5-9 every day,

I have tried near every medication and diet except remicade, nothing works and most of it makes me miserable.

After detoxing from 6mp for several months after it crashed my immune system and put me in the hospital with a 104 fever for a week they finally put me on humira.

Very bad decision.

I was on it for 3 months at my doctors request, and every day forward after starting in mid march was a spiraling loss of control. A constant daily sever shooting level 10/10 pain in the upper left side of my abdomen, it felt like I was constantly being stabbed. bowel movements 15-20 times a day with a 10 second urgency to shitting myself response (it was so bad i couldnt sleep) and diet did nothing. weight gain was around 10 lbs. loss of the will to leave the house, to eat anything, or to even live became a constant depressing mantra.

I stuck it out in may due to my gi clinic’s request, but it was like inducing torture to inject up… and i would not have lasted another 2 weeks at that rate. I quit taking injections mid may, and suddenly the clouds parted, and the first week i felt 10 % better, the next week 20% better, and so on and so on.

If that was a “light reaction” anything more would have been criminal.

It is now July 22 I am on Zero medications other than vicodin and occasional prednisone for when i have to leave the house… which is rare because this disease has ruined my life and humiliated me past the point of no return. but anyways… I feel 100% better after being on humira and 60% of normal, bm’s settling down to 6-10 a day depending on diet which takes me out of the colostomy territory.

I decided (along with my GI) to attempt Humira as a treatment after failing with Remicade and 5-ASA’s and sulfasalazine, and prednisone and rowasa enemas.

Long story short is it gave me severe skin lessions to my hands, scalp, feet, and legs. Along with this, joint pain increased to a level I’d never known was possible. Within a few rounds of the injections, the decision was made to stop.

(just my experience, and I’m hoping that some people with UC have had great results with Humira, just didn’t work for me)

Comments

I was in the original clinical trial of Humira. Originally, I did not know if I was receiving the placebo or Humira. I got sicker and sicker and they just kicked me out of the trial. They claimed that I didn’t want to participate any longer. I’m sure that Abbot Labs just didn’t want anything negative about their money making product. A few years later when Humira was approved,my gastroenterologist wanted to put me on it. At that point, I requested the clinical trial doctor to inform me whether I had the placebo or not. The answer was that I had Humira. I wonder how many other people with adverse effects were kicked out of the trial.

But, all the those poor little babies born with no arms and legs – it was disgusting.
It was only somewhat recently this was addressed, in a typical lazy and years-later fashion and I think I am right when these people got some com-pen-say-shun.

Typically disgusting is the way a very few, like Thalidomide babies, either lost their lives to ssris or even took other lives or even ended up in prison because of ssris.

Today, in the usual press, I read a piece about Thalidomide.

‘Safe’ Thalidomide Hopes

Scots scientists are exploring the use of Thalidomide as a treatment for cancer, HIV and arthritis.
The drug was withdrawn half a century ago as a treatment for morning sickness after it was linked to birth defects, including shortened limbs.
It has since been discovered to be an effective treatment for leprosy and multiple myeloma – a cancer of blood plasma cells.
Researchers at the University of Aberdeen’s Institute of Medical Science believe that changing the drug’s structure could allow its use for other illnesses.
The team hopes that safer versions of the drug can be tested in clinical trials within a few years.
The Thalidomide Society said it supported the use of the drug to treat myeloma.

David, we were all disgusted with Thalidomide and it’s disturbing effects on the foetus in the womb. Does it disturb you that Thalidomide is coming back or do you think, that as it is not given to pregnant women any more that this is a quite reasonable proposition.

In this same paper today, it was divulged that a young baby was given Viagra to help with pulmonary hypertension and it seemed to be working.

So, my basic question is despite, perhaps, a long history of drugs with a ‘very bad history’ is it morally defensible to criticise them, when they return with a more credible use.

This might be the way ssris go.
Is it, also, morally defensible to claim they might have made a few aggressive, violent and suicidal, but in, the long run, they might have a use for something other than depression and anxiety.

Is there anything wrong with re-branding drugs with a ‘very bad history’ into something, that, actually, might be credible.

All drugs are poisons, the art of medicine is finding the right dose and right purpose for these poisons. RCTs tend to give these poisons a clean bill of health – as they did with thalidomide.

It would be fine if a new use could be found for thalidomide. There have been lots of claims of new benefits such as leprosy and multiple myeloma but none of these have stood up. Meanwhile thousands of babies are still being born limbless or deformed by it in countries such as Brazil.

There seems to be a terrible repetition compulsion with some of these drugs – like Bendectin – just brought back to the market – this not thalidomide was the drug used for nausea. As though if we can find some benefit we will cancel out the horrors of the past. Fifty years after thalidomide, we are using more and more drugs in ever increasing amounts in pregnancy with no-one recording what pregnant women are taking or in the cases of miscarriages and terminations – what the mother was on. A new thalidomide could be happening now and companies would get away with it

There was a panorama episode a few weeks ago about the dangers of SSRI drugs in pregnancy. I thought it was rather soft and narrow because of its focus on physical effects, leaving out the many horrible psychological problems that you certainly wouldn’t want as a pregnant women. Still, at least it was some coverage of the dangers and that prof Pilling from NICE seemed like a genuine guy.

Overall the programme was pretty ordinary and the argument that was presented for the use of SSRI’s was the usual predictable tripe. You know, this old chestnut….

“a recent review of scientific literature concluded that the drug “does not appear to be associated with an increased risk of major foetal malformations”.

“The decision not to prescribe anti-depressants to a woman who is depressed… may generate greater risks to the woman and her foetus than the risks of exposure to the medication.”

Every time I read that well used and rather pathetic argument, and then think of how the staff of pharma are supposed to be ‘just like me’, a little bit of sick creeps into my mouth.

But what really interested me was what was going on elsewhere at the same time as the panorama episode. Meanwhile over at channel 501, the Sky news team had ‘discovered a story’ on a potential new genetic test for PND. It was big news, getting re-run every 30mins for the rest of the night. As you can imagine, the segment was about the dangers of depression to the mother and child and how catching it and TREATING it before birth with the aid of this ‘NEW’ discovery, was just we needed.

David said,
“A new thalidomide could be happening now and companies would get away with it”.

In my opinion it is already happening and they are getting away with it. Thanks to the likes of RCPSYCH and the corporate media doing what the money tell them to do.

Heart defects get past the pharma defence a little because of the horror of looking at a little baby wired up to a machine, or going for major surgery to fix a malformation is not that easy to cover up…not unlike the missing limbs of thalidomide. But the many other horrors inflicted on unborn children and their families, well they are not so noticeable, not so easy to measure, not so easy to prove, but many times are no less horrific that a baby with a malformation.

SO who won the battle of warning on the dangers of pill in pregnancy, between Big Pharma/Corporate media/RCPSYCH vs BBC Panorama/Prof Pilling NICE…

As a marketing person, when you look at this situation from the public point of view most are appallingly ignorant of whether drugs are safe or not safe and feel no need to question the judgement of their prescriber.

What occurs to me at this juncture, is that the Daily Mail, in particular, run articles on drugs several times a week by science and health journalists. Most of these articles describe the positives of such drugs and so this powerful media is helping along the ‘no need to question’ fallacy.

Sometimes, in the space of a week, for example, Statins will help every single person over fifty who takes one daily, to curtail any possible future problems. It advocates a safety net – take one, and don’t worry. Isn’t it better to take one and feel safe, than not take one and risk problems developing.

Then someone writes an article saying, it’s a bit worrying this Statin thing. I am not sure everyone should take a Statin, after all.

The same with Aspirin and pain killers and a myriad of other drugs.

Is it beyond hope that every single drug article is followed by a paragraph from Rxisk.org, with it’s now enormous data base, which suggests anybody interested in learning more about their ‘potential’ drug, should type in Rxisk.org which gives the patient an opportunity to make an informed choice and learn about the experiences other people have had.

How about Professor Healy has a meeting with the Daily Mail, in particular, describing his Health and Drug Database and offers them the opportunity to run with Rxisk, for the safety and learning, of all it’s readers.

All it needs is a couple of sentences below each and every article.

I can see in my mind’s eye a huge article about Rxisk and an Editor’s choice to put the Rxisk opportunity below every article about drugs which sometimes are grossly irresponsible and can lead the reader totally in the wrong direction.

Is this too hopeful an idealistic idea?

Would doctors and psychiatrists find this rather unsettling that their decisions are being questioned and that their knowledge is not as up-to-date as they seem to think it is?

I have been on Humira for almost 6 years now. It has worked wonders in terms of putting my UC into complete remission, yet there is still something about the drug that I am iffy about. Mentally, I have not felt like myself since I have gone on the drug. I was diagnosed with Generalized Anxiety Disorder around 8 years prior to starting the drug which I was never medicated for and eventually it went away and I assumed it was a ‘puberty phase’. However, I saw my anxiety come back around the time I started Humira. And it was the worse kind of anxiety I have ever had. I get close to panic attacks when I am really stressed now and I always have a constant tight feeling in my chest. I have spoken to my GI doctor about this several times and he doesn’t think it’s connected… but I do. I also don’t have the same kind of energy I used to. There’s at least one day of the week I feel like I am fighting the flu and I constantly feel burnt out. This is a given since it is hard on your immune system. Another major thing I have noticed is brain fog and trouble concentrating. . For these reasons, I am considering going off of it. I am starting a new career and I feel as if feeling this way is affecting my job performance and my ability to work with people. Anyone else notice similar symptoms since starting Humira?

I was diagnosed with UC at the age of 12. Was down to 63 lbs. and in incredible pain. I was put on Prednisone for a few months and then on regular meds to keep me stable, going back on the Prednisone temporarily whenever I had a flare up. The last time I had a flare up, at the age of 24, I was started in a very high dose of Prednisone. It reaked havoc on my body. Weight gain, bone density loss, heart palpitations, etc. and the flare up didn’t go away. Until I tried Humira. Within a few days I started to feel better and I haven’t had a flare up since. Once every few years I’ll start to sense some mild symptoms of a possible flare up, so my doctor okays one extra dose in between my regular doses and that always stops the flare up before it starts. I have been in remission for 5 years and never been healthier. No pain, no infections, no blood loss, no missed work. Yes the shot hurts, but it lasts 10 seconds and then it’s over. I can’t say that it’s the right choice for everyone, but for me, it was one of the best decisions I ever made.

Thanks for a positive response on this drug. I have had UC for 28 years and now I’m in horrible flares after radiation for breast cancer. I start humera this week because I’ll try anything at this point. I have to live somehow so maybe this drug will work for me and you. Stay In touch and God bless you Sara.

I am a research nurse about to begin a Humira post market registry, which means I will track patients prescribed this drug for 10 years to see how safe and effective it has been for the patients who volunteer to participate. I collect both the negative and the positive results that patients report and the sponsor must include all this information, because the FDA can monitor any clinical site as well as the sponsor. I have been to several different web sites and reading the comments brought me back to 1967 when I was diagnosised with UC at the age of 17. I suffered all the same details I just read in the comments, although my only medication was prednisone. Humira was not an option back then. No one has asked for my advice but we all know that medications have good and bad side effects, if you don’t want the bad side effects of the medications and get to the point where you hate what UC has done to your life my advice is to consider surgery. I had a complete coloectomy after 8 years of the agony and fear that gripped me when I didn’t know where the nearest bathroom was or if I would get there in time. Traveling was impossible because gas stations for bathroom stops were not open on Sundays back then. So if you have done the math, I’m 65 now and have lived with my ileostomy for 40 years. After the surgery I could be more active because the diseased colon was removed my overall health improved. Hiking, biking, skiing, swimming and boating all the activities that took me away from the bathroom were no longer out of the question. Some advantages, no pain, no cramping, no colonoscopies, no fear of colon cancer, no medications or side effects and the newer durable medical equipment for ostomies are well designed. MLW,MSN,RN,CCRC

November, 2014
It is Thanksgiving and this year I am really thankful for Humira. I have ulcerative colitis and have been on Humira for 6 weeks and have my life back pretty much back to normal now. UC wrecked my normal activities as I had to stick close to a bathroom and totally changed my diet. So far I have experienced no side effects and am only enjoying the benefits. Reading all of the negative reviews of Humira almost kept me from trying this drug……….so glad it is working for me!!!

Well the VA diaganiosed I with UC in 2005. I have been on Masoline for years with no luck, the VA started me on Hurmira approx 3 months ago, and my simptons have all increased, 15-20 painul movements in a 24 hr. Period. i have losss 20 plus pounds, got gout from so much fluid loss, right now i have the flu, but the 1st week I started, I had 3 major sores break out on me. I use the pens twice a month, and the VA is already talking about doubling up on my dosege! Something tells me to get off this bus!

I have had UC for 20 years now. After prednisone pretty much stopped working for me, I was startex on Remicade infusions. After an anaphylactic reaction to that, I was started on Enbrel which did not help at all. I was finally started on Humira about 3 and a half years ago. Although I still have occasional minor problems, Humira has been a miracle for me. I pray it keeps working for me because going back to 15-20 trips to the bathroom a day while feeling as though I was bleeding to death is nothing I ever want to experience again.

My doctor had me immediately stop taking Humira when I was diagnosed with Breast Cancer. Read up, breast cancer was one of the malignancies listed on the “possible side effects” list. It has been removed. I suppose not “enough” people got breast cancer to make it worth mentioning…

I started Humira for RA but my RA doctor left. Later I developed UC. The Humira did not work on the UC, and I found that I got complete relief for my RA from Low Dose Naltrexone. Even though I told my Doctor that the Humira didn’t work he wanted me to keep it up. But I stopped and my doctor “through me under the bus,” even though Humira in their documentation, and the FDA said it only had a 18% chance of working.

I have been on Humira since 2007 and it saved my life. I tried every drug on the market and was hospitalized several times for my crohns/colitis. I’ve had this condition for 15 years and it was never under control. After one month on Humira I was a new man and suffer no more. I don’t have any side effects and I have my life back. I know a few other people who take it and it works for them too. I don’t know the long term side effects but I couldn’t have gone on much longer how sick I was. Thanks Humira.

It is nice to hear that there are those who are finding relief for their Ulcerative Colitis with HUMIRA. I was one of those in whom there was no evidence of remission. I went with what AbbVie and the FDA recommended and did not continue HUMIRA. Sadly, my doctor dropped me as a patient because I would not take HUMIRA. This is for the best as he had gotten to where he would not listen to me about the problems I was still having and he would continue writing on my record that HUMIRA was working, yet it never did. Keep up your good work in helping those you can with HUMIRA.

Hello everyone. I’m a 30yr old mother of two and ulcerated colitis has ruined my life for the last 13yrs. I’ve done it all… Every kind of medicine you can think of..prednisone all the time and nothing seems to help my flareups. My doctor has recommended me to try the Humira shot . I’ve been researching it for about a month now and still very cautious on what to do? I’m so nervous to try this drug with all the negative feedback I see but I also see a lot of positive as well. I seriously cannot go another day with this disease it is killing me… Does anybody have any advice on what I should do or any recommendations on taking the Humira shot I really need to get my life back in order for my children .

No one can answer this for you. Humira can clearly do great good but also cause great harms. In recognition of this the expectation was or should be that its use should be restricted to people with serious conditions – as your’s sounds. The concern has been a marketing of this and related drugs to people with problems such as a small patch of psoriatic skin or not absolutely perfect crohns or colitis.

Your safeguard here is if you have a doctor who is committed to recognized the harms this drug can do who will intervene to stop it in your case at the first sign or harm or if its not doing all that as hoped for. Having a nurse paid by Abbott even if you get on well with him or her is not the same thing. Finding the right doctor is your best bet – you can’t assume that all doctors are committed to putting your interests first

I am 71 years old – finally I was diagnosed in 2004 with crohns disease. I know that I had it for far longer than that. The medications I was on sulfa drugs were clearly not doing their job well – I would get flares. Being sick and having a blockage was not great. This year in April my consultant recommended I started Humira – I had to have various examinations and tests – I have a fatty liver but apart from that there was no problem. Initially my most serious side effect was a terrible skin reaction. A patch comes up which is red and itchy for several days and takes almost a week to subside. The inflammation area does not disappear before I get the next injection. I was told by Abbott personnel to ask for an antihistamine recommendation from my consultant. This week I got really sick in pain throwing up. Tests were done in the hospital – nothing shows up – so I go home – still feel I have indigestion. I am not sure what to do – my next shot is coming up – I am concerned that my liver could be a cause – I have a GP appointment this week and will have a discussion with him. In 2000 my gall bladder was removed – Knowing what to do is so difficult!